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CRPS Question: Itching
Hello I was officially diagnosed last week with CRPS after 16 months of being sent back and forth between Podiatry, Ortho, and Neuro doctors.
Sept 2017 I fell and had an avulsion fracture. This didn’t heal and I was in a boot for 11 months before I finally had surgery Aug 2018. Surgery fixed the FX and ligaments but I never regained dorseflextion of my ankle. After EMG and MRI all coming back fine, they finally called it CRPS. My PT has been telling me I have CRPS since Feb 2018 but my drs wouldn’t officially diagnose.
Before surgery I didn’t have any nerve related pain. Just no dorseflextion, severe aching pain, and extreme swelling. After surgery all of the nerve pain started and has continued. I now also get muscle spasms, and electrical shocks through out my entire body, and I have a constant buzzing feeling in my injured foot and leg.
Neuro put me on Lyrica which was helping once I was at 600mg, taking it 3 times a day. But 6 weeks into taking the meds I started itching all over my body and after prednisone and the itch coming back they said I was allergic to the meds. I was weaned off the meds in a week, and was put on Trileptal. 600mg, taking it twice a day.
I’m a week into the meds and I’m still itching all over. It had slowed down and almost stopped when I was weaned off the Lyrica and then off it for 3 days. And now that I’m 7 days on these new meds I want to rip my skin off again. But tonight while it’s getting worse it feels more like tingling itchy then actually itching. On top of the meds not helping with the pain. I’m going to call the dr tomorrow but he didn’t want to listen to me about the itch and sent me to my PCP the first time. I feel like this is nerve related but he insisted it wasn’t.
So my question is has anyone else been itching cause of the CRPS. Could this be a symptom of that or is it truly due to the meds and if so where do I even go from here. I feel like I’m losing my mind. I have black and blues all over my body because I’m scratching so much.
Please help..
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@rags
Have you tried any pain patches with lidocaine? Mine are prescription but it only has 5% lidocaine while over-the-counter has 4% Another thing that has been working for me is Biofreeze.
I also like Biofreeze and Lidocaine OTC. But when I recently had an itchy rash I went to my Dermatologist and got a prescription ointment plus she recommended Zyrtec and Allegra. I have PsA, Sjogrens, IBS and Hashimotos.
I haven’t tried patches. How do they work? I can just go to the pharmacy and pick them up?
I will try anything to feel human again.
@ rags
They are really simple to use. Just pull off the covering on the sticky stuff and place it where you think the source of the pain is. Mine are use for 12 hours and off for 12 hours. I can use up to 3 at a time. I haven't used the over-the-counter but imagine the directions are pretty much the same. Let me know how you do. i care.
Well I used the patches with not much success. My dr finally called in a script for pain meds.
Had my first apt with pain management and he staged me as late stage CRPS since my foot was freezing compared to the other one.
He is putting in for Sympathetic nerve block. 3 of them a week aprt each.
I’m terrified cause I keep reading people end up in more pain then when they started and don’t work.
He also said I will most likely not get full dorsiflexion back in my foot and getting a drop foot brace is the best way to go right now.
Ugh I’m so cunfused and upset. I knew by reading this isn’t fun but when you finally get the bad news it just breaks you.
@rags
I have had sympathetic nerve blocks many times over the years and I have not ended up in more pain. If it worked, usually lasted a day or two for me, then a radio frequency ablation would be scheduled. I have had relief from 6 months to two years with them. I also have foot drop in both feet along with the CRPS. Because my foot drop and CRPS went on so long before being identified my achilles are both shortened and I found braces very painful. Just sayin'.
@barbbie
I’m glad to hear cause I’m very nervous about the blocks. I’m hoping they work.
I’ve had the foot drop since 6 weeks after the ankle injury. Kept on getting sent back and forth to drs cause even now they think it’s a mechanical issue with my foot. I truly believe it’s the RSD/CRPS.
What brace have you found works the best? When I where tall boots (like riding boots) I can’t actually walk with a slight limp. But without that boot I can barely walk. Trying to figure out my options for summer. Shoes and braces. This is a WC case so the waiting for the brace is also my issue. My pain management dr said the braces may be uncomfortable for me too.
@rags
I recently used a boot like the one on this website;
https://www.braceability.com/products/air-cam-walker-boot-cast?variant=7661321584693&msclkid=71c602f6dabb16c7c82e5e69757a94e8
I had my laptop fall off the arm of my chair and scored a direct hit with a corner right on the midpoint of my left foot. i used the boot for 7 months as the swelling and pain also from CRPS made getting into a regular sneaker impossible. It kind of rolled when I took a step which helped with pain. I now have wide Hoka sneakers that have a soft top which allows for swelling. Helps a very wee bit with the CRPS pain on bottom of foot. It's so much fun experimenting! Tried a medical store for sneakers. They were very old looking and had
velcro closures instead of laces. After several tries there, I went back to Fleet Feet. The funny thing the prices were about the same but the quality and appearance was vastly different. Hope you find something that will work for you.
I also have a Workers Comp case and am waiting for approval to have two low back RFAs. Supposedly they are suppose to respond within 30 days. Have a good weekend.
I must confess that I would not rely on the absolute correctness of your diagnosis. Think more along the lines of symptoms. I am not diagnosed with Complex Regional Pain Syndrome, but have spinal stenosis with foraminal narrowing, osteoarthritis, et al. and have been allowed the co-diagnosis of fibromyalgia. All of this was brought about by a gall bladder infection and the resulting sepsis. If I cease taking a regular dosage of Gabapentin (and on occasion otherwise), my skin begins to tingle and then to burn. It can be sheer agony. Pain patches and cream do nothing, nor do the latest medicines that doctors proffer. I would be reluctant to try Benadril because of ties to dementia or similar. You might want to try a good CBD oil extract. Your doctor may have missed some food that you are allergic to. Stop eating processed food and food that you don't make yourself. It sounds like your autoimmune system is overreacting to the injury as a type of infection.
@freshair @rags @rsnowflake
I have a dx of autonomic dysfunction which, from what I have read, is found in all with CRPS. The doctor who dxed me is extremely bright and ever so talented at his job of pain management. I do not eat processed foods, am gluten free due to celiac, dairy free due to
lactose intolerance and an allergy to milk. Am allergic to most medications. I use oxycontin when everything else I have tried doesn't help
as much as I need and I am feeling overwhelmed. I was prescribed 30 ten months ago and I have 1 left. I take CDB oil. I use a tens unit
frequently as well as prescribed pain patches. I also use prescribed lidocaine prolocaine cream for those spots pain patches just don't
work. I am confident in my PCP and pain management doctor. They are both the same age as my older son and I have a great and unique relationship with each of them. They also both are D.O.s. My PCP does OMM as part of my office visit. I also have myofascial pain and he has tremendous healing in his hands and is well skilled in neuromuscular things. A recent trip to the neurologist got me a dx of Stiff Person Syndrome, something I have had for 20 years but never found someone who was familiar with what I had. He was able to dx me because I had an episode while he was doing EMG studies. Despite the challenges this body presents, I am blessed. God's faithfulness, mercy, grace, fantastic love and joy and His desire to have me be all He would have me be, encourages my spirit, my very being to rest in His peace and love as He teaches and guides me through the Holy Spirit.
Thanks for the tip about benadryl.